Thursday, 9 March 2017

Happy 25th Birthday Meningitis Centre Australia

Cameron - Meningitis Centre Australia 25th Anniversary

Last night Cameron joined Meningitis Centre Australia to celebrate their 25th Anniversary.

The Meningitis Centre was formed after a group of parents were invited to meet with Dr Fiona Stanley, at the Telethon Kids Institute, to discuss their experiences of having a child contract meningitis. At the time there was very little awareness of meningitis but people were dying, or surviving with disabilities, from this scary disease that can take a life in only a few hours if not treated quickly. As the parents shared their stories it became apparent that awareness needed to be raised amongst the medical fraternity, and amongst parents, about meningitis and the best people to do that were parents who knew first hand how devastating this disease can be.

We sat in hospital 4 years later and found the Meningitis Centre's very first brochure which became our bible to answer even the simplest of questions, such as - how do your spell meningitis? At this point the centre was very much a support group for families, an information service and advocacy had started to get meningitis vaccinations developed and on to our free Australian vaccination schedule. The driving force behind all of this was Bruce Langoulant who's daughter Ashleigh had contracted Pneumococcal Meningitis 8 years earlier, the same strain of meningitis as Cameron had, and been left with severe disabilities as a result. Their family became our beacon of hope as we sat in hospital with our comatose child not knowing what our future held but instinctively knowing it was never going to be the same again. I could see that life had gone on for them and they had survived, so I was able to convince myself that we would survive too.

When your child is not born with a disability you automatically don't belong to those parent groups. When your child is not the victim of a horrendous accident or incident you don't belong to those groups either. When your child doesn't have a specific label for their disabilities it leaves you not belonging to any groups for support so the Meningitis Centre became our haven during Cameron's childhood because when we met up with other families who had experienced the same life changing trauma as we had we felt understood and comforted. It hadn't all been a crazy, made up dream. Meningitis Centre coffee mornings became a highlight of my calendar.

When you move amongst the meningitis community you quickly realize that everybody has experienced different strains of meningitis. Some people have passed away, some have survived with no apparent after affects - although some after affects appear later in time. Then there are those who have been left with many different and varied disabilities and medical issues according to how their body has reacted to their strain of meningitis. We've met people with growth issues, amputated limbs and other body parts, deafness, blindness, cerebral palsy, autism, behaviour issues, mental health issues, brain damage, loss of speech, learning difficulties, lack of physical abilities and many, many more. Then you have health issues with epilepsy being a big one. Everybody is different but every family shares something in common and that is the trauma of what happened the day their family member became ill. That trauma is never forgotten and is scarring. You hear common threads in everyone's stories whether their stories are 25 years old or 2 years old. Every time you hear somebody else's story your emotions swell because you're hearing your story again.

25 years later, thanks to Bruce and the Meningitis Centre, we have free vaccinations available nationally, in Australia, for Hib Meningitis, Pneumococcal Meningitis, Meningococcal C and a vaccine available for Meningococcal B which you can buy. Plus, just in the last month, Western Australia has shown huge leadership by being the first Australian state to make a free vaccination available for Meningococcal A, C, W and Y, with several other Australian states following their lead.

Who knows how many lives have been saved due to the meningitis vaccines being developed and made available nationally. How many families have been spared the trauma of this terrifying disease, every family is traumatised no matter what the outcome. Or how many families have been spared the on going trauma and cost of lifetime care for a disabled family member. We will never know but we do know that in Australia Hib Meningitis has now disappeared and all vaccinated meningitis strains have dropped.

Not everybody chooses to vaccinate, for varying reasons, but the Meningitis Centre has worked tirelessly to raise awareness of all the strains of meningitis in the hope that families will vaccinate. If they don't vaccinate, for whatever reason, then they will hopefully be aware of the signs and symptoms of meningitis and they will be aware of the need for speed in getting medical assistance. We know many people who got help quickly and their family member has been able to go forward with limited or no after affects and live a productive and happy life. Every minute counts.

The worlds population is now so transient that strains of meningitis previously only seen in certain pockets of the globe are now seen around the world thus the need to expand awareness and vaccination protection globally. The Meningitis Centre didn't stop at only worrying about families in Western Australia or just Australia, they joined with meningitis organisations around the world to form CoMo - Confederation of Meningitis Organisations - to work together globally and assist each other in every ones primary goals, to eradicate meningitis through vaccination and raise awareness of the signs and symptoms. Shared resources and knowledge make a little go a long way and most of theses organizations have been created and run on parent power.

The question was asked last night if the Meningitis Centre was still relevant 25 years later. Considering their success in raising awareness in the general community about meningitis and in supporting the development of vaccines and then successfully lobbying to make them available to all Australians this was a fair question. But an easy one to answer. Yes it is still relevant.

In Australia we still have two vaccines which need to be made available Australia wide on the free vaccination schedule, there is still much lobbying to be done. We have doctors questioning parents decisions to vaccinate against diseases not on the vaccination schedule so therefore greater meningitis awareness needs to be increased within the medical community.  No parent should vaccinate their child without considered thought but we are hearing repeated reports of some disturbing discussions happening in doctors surgeries. I, myself, have had a few.

Then there is the need for awareness of the signs and symptoms. As each generation of parents comes along they need the information the previous generations before have benefited from. There will always be people who chose not to vaccinate and those who can not be vaccinated for various reasons and even though we strive for herd immunity, with vaccinations, there will eventually be outbreaks of diseases such as we have seen with whooping cough in recent years. Add those factors to our transient world population moving diseases around the globe and you can never be nonchalant. The cost to our future children is too high.

There is also the need for support for affected families and meningitis sufferers. Where else are you going to find the understanding and comfort needed than with those who have walked in your shoes. So yes, the Meningitis Centre is still very relevant and will be well into the future.

So in this, the Meningitis Centres 25th year, I would like to raise a glass to Bruce Langoulant and all the professionals, parents and families who have worked alongside him over the last 25 years to save our children. Bruce didn't set out to only save children from contracting Pneumococcal Meningitis, which affected his family so devastatingly, he set out to save everybody, everywhere from ever encountering the devastation of Meningitis. Thank you Bruce for never giving up the fight, 25 years is a very long time and it's been a long road. You truly can lay down your head each night in the knowledge that you have made a difference and your legacy will live on forever. Parents across Australia tuck their children into bed each night blissfully unaware of how lucky they are that you have made a difference. The vaccines were too late for Ashleigh and Cameron but knowing that others are not living our lives makes it just that little bit easier to live with.

Happy Birthday Meningitis Centre Australia and all our friends in the Meningitis Community.


Wednesday, 1 February 2017

My Life Has Shrunk

I wrote this blog post two and a half years ago. I was going to update this post but decided it is a capsule of my life at the time so I've left it in it's original state. A few details about my day to day life have changed since I wrote this post but the reality I was sharing is just as true today.


It's not been a good week starting with the drug debacle My Nightmare Came True  and ending with my realisation of how little time I've got to myself now.

When your children start school you feel so lost without them, how on earth will you survive 30 hours every week without them. Then fairly quickly you realise how precious those 30 hours are especially if you are the only one at home. Some people head back to work, others to study, some to voluntary work and then others are super parents making sure the pantry is stocked, the house spotless and everything in control for when the silence is shattered when the school siren rings in the afternoon. Some Super Super parents balance some and all of the above. But regardless of what you do you realise the joy of those 30 hours every week that you can control.

I did most of the above, I've worked, volunteered, kept house and on occasion slept to maintain my sanity. When My Little Angel came along one of the realisations I had to come to term with was that my me time was gone again for another 5 years until she too started school. Not that I minded.

I don't say any of that because I see children as a burden or nuisance, I say it because children are the most wonderful and exhausting journey anyone can ever join and having some time out is essential to survival. Then you add the joy of a special needs child and you really, really need some time out because it is especially exhausting. One friend always said my one child was equivalent to six.

I'm not talking about time out for spas and massages, I'm talking about time that is under your control whether you are working or sleeping, you have made the decision about what you are doing and it is under your control because you can.

Then your children grow up and leave school and your day to day responsibilities of parenting change to less hands on and more mental worry. Unless of course you have a child with special needs. There's no rest for you because your child still needs hands on daily care, you can't start to take a breath and prepare for the empty nest syndrome. There's no - Well now I've grown my family and now it's time for me - Oh no.

Instead, for most of us with special needs children, we either work to pay carers so we can stay in the work force or the child free hours we have control over drop dramatically and there is nothing we can do about it, it's a government decision.

It's ironic really because as the years pass by and you become more and more tired from the constant hands on care that exhausts most parents in those early years we face less time to recuperate and recharge but continue to provide the same level of care to a person bigger and harder to care for.

Instead of 30 hours a week I now get 16 1/2 hours a week to myself and that isn't a lot especially if carers are late to pick up or early to drop off.

This really came home to me this last week when a carer was half an hour late to pick up causing me to miss an appointment. I realised I have little control over my life now and no future date when I will have my own life to control again. I'm at the mercy of other people and have to fit around others schedules and decisions for me.

Of course like everyone else in my position I am making the best of it and getting house work done while Cameron isn't home and anything that is away from home is restricted to four hours on three days. I'm lucky, some people don't even get as much as I have and I feel bad for feeling sad and cheated. But it's pretty sad when you look back and say - My child's school years were the best years of my life.

Monday, 30 January 2017

Two and a Half Years Later

Our family October 2016

It has been 2 and a half years since I last wrote and published a blog post. So much has happened in that time and I couldn't bring myself to blog because this was my happy place and life wasn't feeling too happy. But life is starting to finally change and it's time to re connect with things that make me happy and writing is one of those things.

So for those who weren't able to follow along on Facebook for the last two and half years here is a brief catch up on life:

Cameron was 18 1/2 years old when I last published and he is now 21 1/2 years old.

My Little Angel is now 13 years old and about to start her second year at high school. She is still an angel although at times a very lovable, moody, teenage angel

My Marvellous Man is still marvellous.

Cameron still has his cat Pav but he also now has a dog called Rocco who is a black Labrador/Retriever. More about how alike Cameron and Rocco are in future posts - they must have been separated at birth in a previous life.

We moved again. I know some of our friends are rolling their eyes as they read that statement, they're sick of moving our furniture although they are very good at it after so much practise. We moved a year ago to a country town an hour out of the city so we can still see our families and city friends, access therapy and MMM could continue working with his employer. This move also brought us to within half an hour of some of our most important support team members - friends who've been friends forever and feel more like family. 

We own a home again and it has space so we are no longer living on top of each other, although Cameron spends most of his time within one square metre of me. The house has a huge backyard and our ultimate goal is to build a second dwelling out the back for Cameron to live in independently with support workers and hopefully a housemate.

We are no longer at the mercy of a Support Worker Service Provider when it comes to Cameron's government funding. We took control and now self manage our funding. What this means in a few weeks when we transition to the Western Australian National Disability Insurance Scheme (WANDIS)  is a bit of an unknown but we have no plans to let other people control our lives again like it was back in 2014. We have two fabulous support workers whom Cameron adores and so do we. There will be lots more about funding and supporter workers in the coming months, I am sure.

Cameron still goes to Riding for the Disabled (RDA) but he now goes to RDA Murray Mandurah, which is nice and close to home. Last year he was Carriage Driving, which he loves because they go fast. MLA is now a volunteer for RDA which has been a life goal for her. So far I have dodged all the requests and broad hints to get involved at the centre.

Cameron still attends The Institute for Functional Neuroscience. His support worker takes him and I just go in for meetings. It was unusual at first not going to therapy with Cameron and trusting someone else but it was time. He needed his independence from me. He goes into all his appointments and assessments independently and his support worker waits in reception.

I'm sure you are wondering where Cameron is at in his development. Well, to honest he is still a toddler, just a very big and very strong toddler. Still non verbal and still not toilet trained. However he has developed. His fine motor skills and automatic responses are good. His comprehension of situations is amazing at times and there has been absolutely no seizure activity.

He still growls and grumbles at me.
He still follows me around and invades my personal space at the most intimate and inappropriate times.
He still wets his bed and clothes on an almost daily basis.
He still wanders and gets into trouble a lot. Right now he has just tried to do a runner out the front door when my back was turned and is now down at the TV growling and grumbling because he got in trouble.
He still loves his iPad and is onto his second one.
He still chats away to me in Cameron language that only he understands.
He still eats everything and anything and has to be stopped from over eating.
He still loves everyone and never forgets a face.
He still loves Playschool and the Wiggles but we no longer put on DVD's or allow him to binge watch either show. He really likes Emma Wiggle.
He loves to get hold of the TV remote and if you show even the slightest interest in a show he will change the channel.
He really likes watching TV Shopping channels. I suspect he thinks they are talking to him.
He still loves going out and watching the world and meeting people.
He still knocks on doors when he shouldn't.
He still loves CARS and he still doesn't have a drivers licence, as I remind him every time he tries to sit in the drivers seat.
He still loves music.
He still tries to hug and inappropriately touch total strangers.
He still loves blondes.
He still curls up and has a snuggle with me.
He still gives the best hugs.
He still has the biggest smile.
He is still VERY LOUD.
He still has the loudest, most infectious laugh.
He still has a wicked sense of humour.
He still makes us laugh.
He still gets us involved in the most ridiculous situations. All you can do is laugh.
He still shares his love with the world.

Cameron is doing really well for Cameron. Of course we wish he was further along in his development but he is developing.

So there you have it, that is where we are at. Life is still crazy and chaotic and I suspect that will never change. We're still exhausted and I can't see that changing for the foreseeable future. We still laugh and cry and work our way through life's challenges in the best way that we know how at the time. Not much has changed really.

It's been so nice putting finger tips to keyboard. I feel a little bit like my old self again. So much so that I gave the blog a face lift and impressed myself with the realisation that I could still navigate myself around Blogger - it can be a challenge sometimes. So here's to many more blog posts and maybe that book I've been wanting to write.

Read you all soon.

Thursday, 26 June 2014

My Nightmare Came True

Cameron 18 years old

I've been quiet for a week because I was in shock and trying to process what happened. Why??? Well ....

Last week Cameron left our house with a person we had been asked to trust and we believed we could trust. When Cameron arrived home his clothes stunk and I immediately questioned what this odd smell was. It was overpowering and I had to change all his clothes immediately.

I admit I have lived a sheltered life, yes I drink wine but didn't try alcohol until I was in my twenty's and I've never smoked and have never taken drugs either.

I know what cigarettes smell like and what cigars and pipes smell like and this smell was nothing like them. It was different and my mind kept searching for an explanation.

Finally after discussions with several people I realized that Cameron had been in an environment where people had been smoking marijuana. Even as I typed that my brain went numb. How did this happen? This can't be true.

We don't know if the person he was with was using or took Cameron into an environment where others were using. We don't know if they offered Cameron an opportunity to try it too or if they forced him to try it. Cameron is so young of mind, he would have had no idea that where he was was wrong or that what was happening was wrong. He wouldn't have known what to do or how to remove himself from the situation. He would have stood there like an innocent child.

Meanwhile we know he breathed in the smoke and was potentially put at risk as the person he was with drove him home.

My biggest fear of letting Cameron out into the big wide world without us is that he can not speak and tell us what he has been doing. He can't tell us if someone does something to him or that he felt uncomfortable or something was wrong. He can't protect himself by himself and can't remove himself from dangerous or scary situations. He is mentally a toddler and toddlers need protection and others to care for them and speak for them.

The person Cameron was with took advantage of the fact Cameron couldn't come home and tell us what he had done that day or where he went. He took advantage of the fact he couldn't tell us what the other people were doing or what the person he was with did. He used the fact Cameron couldn't speak to take advantage of the situation and completely abused his position of trust.

This situation has been my biggest nightmare and now it has happened and it's shaken me up. I want Cameron to go out into the world but I want him to be safe and I want the people who are with him to care as much about him as us. That may seem an unrealistic desire but I don't think so.

We've been criticised for years for not putting Cameron into respite care or paying strangers to care for him and this very situation is why we didn't. Cameron has no voice and we feared people would take advantage of that and clearly our fear was not unfounded.

It is awful that Cameron was exposed to drugs but I can get over that, what I can't get over is that Cameron's lack of communication was taken advantage of so the person he was with could do something that was wrong and potentially dangerous.

I hasten to add that this person was not a family member or friend, thank goodness because if that happened I don't think I could ever trust again.

Friday, 20 June 2014

I Fake Called Cameron and it Worked

Cameron 18 yrs old and Me (Quite a bit older than him)

The other day Cameron was being rather difficult about getting ready to go out with his carer. He'd resorted to sitting on a chair in his bedroom and was refusing to move or get dressed. It didn't matter how I pleaded or demanded, Cameron just wasn't moving.

What was I going to do, time was ticking away and I needed him ready when his carer arrived. Then I remembered a trick which has worked rather successfully on his sister a few times in the past.

I fake called his carer.

"Cam, do you want to go out today with .......?"

Head shake no.

"Are you sure?"

Head shake no with a look on his face that said - try and move me.

"Alright then I will ring her and tell her that you aren't going today."

Cam just sat there and stared me out.

I left and returned with my phone pretending to look up a contact and dial it.

"Hello ....... this is Jane, Cameron's Mum. Hi. Cameron doesn't want to go out today with you. He won't get dressed because he doesn't want to go"

Listening to silent phone while Cameron watches me.

"You're ten minutes away? Okay, well I'll tell him. See you soon."

Close phone.

"....... says she is almost here and you better hurry up because she needs you dressed when she gets here and you're to stop being silly."

Turn around and walk out of room to put phone away.

Walk back into room to find Cameron walking towards his clothes whilst taking off his top with a rather worried look on his face.

I was grinning on the inside whilst being very matter of fact about getting Cameron ready because he only had ten minutes.

I could not believe that the fake phone call had worked. Cameron totally understood the scenario I had played out for him and had taken it very seriously.

I have to admit I am very lucky that Cameron couldn't walk out and ask his carer about the phone call and therefore couldn't catch me out in my little white lie. I was lucky.

Then this morning I had another little struggle with Cameron again whilst getting ready for his carer but this time over brushing his teeth. He was standing at the front door waiting for his carer and wearing a huge grin whilst refusing to go to the bathroom.

"Cameron do you want me to call ...... because I will and I will tell her that you can't go with her today because you won't brush your teeth."

Suddenly a look of concern crossed his face and he begrudgingly walked slowly towards the bathroom. I wont lie and say the teeth brushing experience was wonderful because it wasn't. It was the usual tussle and argument which I am sick of but at least I did my best to get his teeth clean and he did as I asked so I see that as a Win Win.

Even though this seems like a little story about getting dressed and brushing teeth it is much more important than that. Cameron understood a very abstract concept and reacted accordingly and I think that is amazing and a reason to be very, very happy.

Thursday, 19 June 2014

Toileting - 18 Year Old Style

Cameron 18yrs old

The quest for Cameron to become an independent toileter continues. It is painstaking and tiring, frustrating and infuriating. And sometimes it's just plain funny but not very often anymore.

From time to time Cameron has a dry bed and there is much celebration on my part because I don't have linen to wash that day. Then you also have days where you have two or more sets of linen to wash in the morning because it's been an unsettled wet night. My eyes just roll when I get out of bed on those mornings. It's so frustrating.

Cameron goes through phases where he will take himself to the toilet and he does actually go to the toilet. However we still have wet pull ups so he isn't doing it instead, it's just as well.

We have very little success in taking Cameron to the toilet. 99.9% of the time he will not do anything. He just gets frustrated and so do we so we generally don't push the issue.

Lately he has been having a morning wee in the shower and I figure this is fine. It's all going down the drain and he knows he's doing it so that has to be a positive thing. Sometimes he will tell you he needs to go to the toilet after waking up and takes himself off successfully which is always exciting.

The other thing he has been doing I think is a positive sign. You know how toddlers will wait till you put a fresh nappy or pull up on them and then do a poo or a wee? Well Cameron has been doing this a lot lately so I think this is developmentally appropriate. But that's not all.

He has also developed a habit of standing on the front door mat watching the traffic go by and going to the toilet. Toddlers will often have a favourite place to go to the toilet so again I think this is a good sign that this is developmentally appropriate.

However it is all rather frustrating in the mornings. I get Cameron all ready for his carers so we are ready five to ten minutes before they are due. He then stands at the front door waiting for them and guess what? I am then madly cleaning him up and changing him with seconds to go. We often watch his carer arrive as I am grabbing wet wipes and then I am yelling out to give us a minute.

I've tried waiting to dress him till the last minute but he still manages to catch me out even if he only has to wait for a minute or two. Friday I thought I'd timed it all perfectly but no, the carer arrived early and he wasn't ready. I can't win.

Having a non toilet trained 18 year old is horrible. The messy clean ups are horrendous and the constant accidents and wet clothes and wet linen are tiring. But I can see progress so maybe one day we will get there. I just wish one day would hurry up and get here a little faster.

Wednesday, 18 June 2014

Where's Cam? Yelling at People Over the Fence.

Cameron 18yrs old

Cameron really doesn't have much chance to be independent so when he wants to go outside and look over the fence, I let him.

He used to stand outside at our old house and look over the fence and there he had a view of the school oval so he watched people jogging and people walking dogs after school. He would have loved it this year now that he isn't at school because he could have watched school sports carnivals and sports lessons.

Recently some friends arrived and when they did the obvious question was asked - Where's Cameron? Oh, he's outside yelling at people, I said casually. Oh my goodness, he's yelling at people!!!

Yep, there he was standing at the fence yelling something that was incomprehensible to passers by. I can't imagine what people were thinking and considering some of the people who live around here, I'm surprised we didn't hear people yelling back at him.

He was quickly enticed inside because we had visitors he loved but today he decided he was going outside and I had a mini panic. What if he started yelling again? The lovely old lady was outside across the road, would she be offended?

Thankfully he was quiet today and just watched the world go by for about half an hour. But you can see in his eye a wistful look of longing to be out there in the big wide world himself and that makes me feel sad for him.

Cameron 18 yrs old